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Autism Awareness April 2012

Last April 2011, my wife and I helped the Autism Classroom of the Roberto Silva Morales Elementary School in Juncos PR, with materials and sensory equipment purchased with all the donations we gather from the customers of several Subway stores. This year, again in harmony with the International Autism Awareness Month, my wife and I decided to help this classroom once more, and we worked together to get a donation from Amgen (the company I work for). With the donation, one of the things the school bought was one of those big wooden gym sets with swings, sandbox, slide, monkey bar, etc. My wife thought that maybe I could help setting the wooden gym, to which I immediately accept when she told me, but then I thought it would be even better if I could gather a group of people with whom I work every day in the project LRPM 2011. I didn’t know what to expect, but when I started mentioning the idea to the team their response was of total support.

We setup the date and we went there on the afternoon of 04-03-12 with tools and eager to help. Before we started the construction, I introduce the team to the teacher (Ms. Doris Camacho), who was impressed with how many people had taken from their own time to do this (special thanks to Mayra, William, Steven, Omar, Erik, Javier R., Javier C., and Rafael). Even though we were a team of 9 people, the equipment had so many screws and different parts that it took us some long hours to put it all together. Nevertheless, the enthusiasm and teamwork remained evident, not only for the satisfaction of what and for who we were doing that, but because we were taken good care of with food, water, and even fresh lemonade. The mastermind of that was my wife Daisy, who also got a donation from Subway Juncos (they always answer yes when you ask them), of an exquisite platter of sandwiches along with a box of their delicious cookies for Amgen’s volunteer employees. Thanks Daisy, Amy, and Ronald.

During construction, I received a wonderful surprise with the visit of my son Diego and my daughter Sofia. Diego immediately began to inspect our progress and wanted to climb the ladder. At the end, already night-time, we were pleased of what we had done but there was still something missing. We had to actually see the kids enjoying the wooden gym in order for the experience to be complete. So the next day I talk to the teacher and we went there during our lunchtime. There we had the opportunity to watch them play with it, laugh and had a great time. Even one of them give us thanks for it.

For me, and I know for the rest of the team, it was an amazing experience were we had the opportunity to help these wonderful kids, this excellent classroom and teacher, and in addition to all that, it open the channel for conversation about Autism and all its different variables. This is what awareness truly means.

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Miracle at Cartoon Cuts

My wife said it right. When I sent her a short video of our son calmly taking a haircut she said: “it’s a miracle”, and she was right; it truly was. He sat by himself and let the hair stylist cut his hair while he watches Cars 2. He moved and complained every now and then just like any kid, but overall it was great. I was stunned for a moment and then excitement took control of me, and I began taking pictures and congratulating my son on how well he was doing.

Since this is a place just for kids, they have a TV in front of every booth so they are entertained. Yes, this is great. And if you are wondering why we didn’t bring him to this place before; we have but with the same struggle as in other places. We tried everything. Paying for in-home haircut service, we tried doing it ourselves, we took him a couple of times to Cartoon Cuts when he was little, and we also took him to the place where I usually go to get my haircut, which worked for only some time. There was always a struggle and some sort of fight between him and me, and with the stylists who were just trying to do their jobs. There were screaming, pushing, kicking, and chair spinning, but somehow I always managed to complete the task. I try to avoid it as much as I can because the whole event is painful for me too. Every time I get out of there exhausted physically and mentally. As a father I don’t want my children to suffer, and seen him in fear or perhaps pain breaks my heart but sometimes there is really no other choice.

The last time I took him to the place that I usually go it was so terrible, that even the employees told me that perhaps I should bring him another time, maybe on another moment when he would be more willing to let it happen. I was so frustrated for not being able to control him, even though we had done it many time before. We (me and my son) had succeeded against all fear on every occasion, but this time Autism was stronger than both of us. The experience was so bad that I deiced to never go back to that place again. At this time we tried again to perform it at home with no success. I even tried to do it while he was sleeping, but it didn’t worked well either because after a couple of minutes he woke up with just a portion of the work completed. One day my wife told me that she wanted both of us to take him to Cartoons Cuts to see how it goes. She got to sat him in her lap and there was some resistance, but overall it wasn’t as bad as I expected. This gave me some confident for next time, so I took him by myself and you already know the end of the story.

For parents of typical children, these are everyday simple tasks. For parents with a child with special needs, Autism with sensory disorder in our case, going to a Doctor appointment, to a store just to buy groceries, even holiday events and family gatherings are stressful and need a lot of planning ahead. And no matter how much I could try to explain or describe it, you have to live it to really understand the implications.

As time goes by and he grows older I’m seen him mastering activities and accomplishing many new things, which reminds me of his potential and gives me more strength to continue exposing him to all type of environments and help him manage new challenges. I have to give credit to Carol, the stylist that patiently and wisely took care of my son’s haircut. I will definitely return to Cartoon Cuts and ask specifically for her services next time my son needs a haircut. This is a huge step forward, and we are very proud. Great job Diego!

Hungry for Noodles

One thing I worry about Diego’s future is his independence.  How he is going to take care of himself, when currently almost everything has to be done for him?  And I’m talking about the basics things we have to do every day; like brush our teeth, get a bath, go to the bathroom, get dressed, or eat by ourselves.  For me when the time is right, every typical child learns these things easily with some instructions and basically by the modeling of others; at least it has been that way with his brother and sister.  In Diego’s case the story is different; he doesn’t learn how to do them as easily, and sometimes it seems that he doesn’t want to be taught how to.

Taking a bath, for example, is something I’ve started teaching him.  I explain to him what we are doing while manipulating his hands on how to do it.  There has been some progress, and now I can even have the water faucet open for a short time while he is inside the bathtub (he usually doesn’t like the sound that the faucet does when the water is flowing), but unfortunately little overall success.  The brushing of his teeth is something I’m also working on, and I can say he is getting the idea.  He identifies his tooth-brush and the tooth paste, and let me manipulate his hand without complaining.  His not there yet because when asked to brush them by himself, he does place the toothbrush in his mouth but just to chew it.  In the eating department is where I can say he have shown the most progress.  But this story started a couple of months ago, when he used to eat just rise & beans or french-fries.

One day my wife was eating noodles and he showed interest in tasting them.  She agreed, and the most amazing thing happened; he liked them!  And he liked them so much, that from that moment he only wants to eat noodles.  For breakfast, for lunch, for dinner, and anytime in between, it just noodles what he wants.  But let me clarify that it’s not any type of noodle.  It has to be Japanese-Style Stir Fried Noodles with Savory Sauce, whatever that means.  Thank God they come fully cooked, 3 minutes in the microwave and you are ready.  The thing was that every time he was going to eat, he was so excited while I prepare them that I figured that I can negotiate the eating-by-himself learning process; and so I did. I told him: “if you want them, you have to hold the fork yourself”, and he allowed me to manipulate his hand.  I had tried this many times before with the rise & beans but with no success, since every time he refused to learn how to grab the spoon and take the food to his mouth.  With the noodles it has been different.  After many weeks of practice I can proudly say that he is now eating the noodles basically alone.  Isn’t that amazing!  I even took a video to show other how well he is doing.  Now he patiently waits seated while I prepare his favorite noodles, then he eats them all by himself.  

For a father it is a wonderful feeling when your children get to master something.  But I got to admit that with a typical child you kind of expect that they will get it sooner or later.  With a child with Autism you know they have the potential but sometimes you are not sure if they are going to learn some specific tasks or not, so when it happens it brings you tears of joy and an enormous amount of hope for the future.  Great work Diego!

No More Labs!

Two nurses, one laboratory technicians, and one strong father; that’s the team needed to perform a blood test to my son.  Every now and then a doctor or specialist prescribes some sort of blood test; an activity that could be a difficult task with any typical child, and my son isn’t the exception.  What I have to do is the following: I seat him on my lap, hold one of his arms with one of mine, hold his chest and head against me with my other arm, and hold his legs using mine.  In the interim, the lab technician and one nurse help me holding his legs while holding his other arm steady, and then the other nurse pricks it with the needle.  This is hard for me, physically for obvious reasons, and psychologically because he doesn’t stop complaining during the procedure.  As fathers we don’t want our children to suffer but I know I have to do this for his own good, so I sort of block my “protective-father-mode” and focus on what has to be done.  I remember one time when we went both (me and my wife) inside the laboratory room, and she was so protective and giving a lot of instructions to the nurses on how not to hurt him, that they said to her: “mom, we can handle this with just the father, why don’t you wait outside please”; funny right? So from that moment on, for better or for worst, every visit to the lab is on me.         

But all that drama is the end part of the experience; first I have to make him enter the laboratory room.  Sometimes he doesn’t want to get out of the car (he already know the place and for what we are going there), sometime he does but doesn’t want to get inside the place.  The last time he enter just to the waiting area, but it was kind of difficult to get him inside the lab room, were the actual procedure takes place.  It’s amazing how he can become so heavy and so stuck with the furniture when he doesn’t want to be picked up.  This time he jammed his legs with a couple of chairs that were in the waiting room, which then jammed them self’s with another chair, so I was hopelessly trying to lift him along with three chairs.  They looked at the situation and seemed to be deciding if they should help or stay back and wait.  After a while I was able to pick him up and get him inside the laboratory room, and you already know what happened.  I was glad that the waiting area was empty.  Not for embarrassment of any kind, but for the potential of hitting another one during my struggle with the chairs.

All the activities surrounding simple blood tests are always stressful and exhausting, and I think about it more than twice every time a doctor gives us a lab order.  After going through it, what reliefs me is that at the end he just forgets the incident, and go on as if nothing has ever happened.

Beach Experience

If I could talk, I would tell you that right know I’m having a great time. Why?, because you took me to the beach, dad. I found it easy to feel and express joy, happiness, and excitement when I’m stimulated by all the sensory information I get here. Do you want me to share them with you?; Great, here it goes!

When we are in the car getting closer to the beach that you usually take me I began to feel excited, but it is when you open the door and the salty smell hit me, that I have an assurance about where you are taking me. Then we walk towards an immense area filled with water, which for some reason doesn’t stay still and makes a very loud but intriguing noise. Then, in order to get there we have to walk on soft and worm sand, which for an unknown reason changes in temperature and consistency as we approach the water. Finally I get near the water and then…; are you looking at me dad?, I’m playing catch-me-if-you-can with the water! This is awesome! I forget about everything else, I feel alive and free. Thanks dad for bringing me here”.

You’re right, that’s my son’s feelings being expressed through the eyes of his father. At least that’s how I saw it the last time I took him to the beach. Since he can’t talk, I can only try to interpret his feeling by his expressions and his behavior, which I do every now and then. At first I was very concerned and worried about him not being verbal, and was anxious to find something that would make him talk. Time has passed and I’ve come to realize that what’s important is that he learns to communicate in one way or another.

It’s amazing how he teaches me every time that we are together, to pay attention to the little details and to things that we usually take for granted. For me it was just a day at the beach, but for him it seemed to be like an amusement park, were he can’t stop laughing and jumping.  I do have to watch over him carefully though. He focuses so much in his delight that slowly moves far away from me.  He sometimes unintentionally throws sand to other people; you know, to the ones that lay down to get a suntan.  He could get confused about where our lunch bag is and may try to take food from other people, or he could runs behind any dog that’s being walked on the beach. Besides that, I can pretty much hear to my heavy metal music on the iTouch, read a VW magazine, or just sat there and watch him have a good time.

A trip to the VW Show

Today I went with my son to a VW Show in the town called Peñuelas. It was a long trip from home, but for him this hasn’t been an issue in the past since he enjoys the trip through the window view. The cars around us, the buildings, and then the mountains, trees, and the clear skies as we got away from the city; I think is just the different landscapes and surroundings that he likes. And for that I can’t blame him since I’m the same way. For us is not the destination, is the journey.

During the entire morning he had trouble keeping his diaper. That struggle was handled first by his mom starting from approximately 4:00am. Yep, is not a typo; he woke up at 4:00am on a Sunday. Later I got involved too in the incessant game of the diaper, until it was time to go. I had told him several times the week before, that we were going to a Volkswagen Show and when I remind him, he just agreed to get dress and easily got inside the car on his car seat. I haven’t figured it out why, but it is at our home that he doesn’t want to be dressed, not even his diaper; it is a constant battle between him and us.

So we began our journey and not too long after that, he was hungry. Since his day had begun so early, his lunch time had also shifted. I remembered that there is a McDonalds in Santa Isabel, but when we got there they didn’t have the nuggets and fries because it was too early. We continue our trip and at 11:00am we start looking for another one. It is amazing that Ponce has different Burger Kings facing each other just across the street, and I could find a McDonalds. Let’s not forget that if it’s from fast food, my son will only eat from one place and no other. We finally found one which was perfect. It was perfect not for the black and white tile pattern that my son liked, but because it was empty. He likes to sit in the middle of the slide to calmly eat his fries, so usually I have to persuade him to move so that other kids can use the slide. He also likes to lay down on the floor with his food, and somehow he picks the middle of the area were all other kids are running. But what worries me more is not that he is in the path of the other kids, he has the same right to use the space as any other. Is that when other kids bump into him and touch his food or it gets in the floor, he picks them up and eat them anyway.

We finally got to the place and he seemed happy to get out and see what was happening. So we began to walk when he saw a dog of a person sitting at a domino table. It was instant happiness for him, and for the dog who was bored. They both laugh and play for a while, and then we continue our hunt for good looking VWs. Not long after that he began to pull me into one direction and when I look closely I realize he was dragging me to a VW that was the same color as mine. Apparently he thought it was ours and wanted to get in, and perhaps go already. Obviously I couldn’t open the door so he got frustrated and throw himself (carefully) to the floor. It is amazing how a little of dirt can influence my son’s behavior and shift his feelings from frustration to curiosity. When he was on the floor he noticed the dirt on the street and immediately sat and began playing with it; just grabbing a handful of it and throwing it slowly back to the street. I let him for a while and then convince him to get up and walk with me to our real car. We were not in the activity for too long, but I got a glimpse of all the cars and even took some pictures. When I take him to this kind of activities I know that he may want to leave soon, but I still got to try to get him to see and experience things and activities other than our home, school, or his therapy sessions.

Have a Great Flight

She tries to calm him but with no success. People are looking at them, some with criticism and questioning the mother, maybe others with concern. After a long day between airports and airplanes, he just can’t take it anymore and throws himself to the floor and continue screaming. “Is he ok? Is he having an epileptic attack?” the airport security officer asks. “Don’t worry. My son has Autism and is just having a tantrum. It has been a long day for him, he is just tired.”

We were on our way to Austin Texas, for a special therapy for my son. The flight schedule was from San Juan, to Dallas, and then to Austin. This situation happened when we arrive at Austin, while I was dealing with the car rental. When I got back, he had taken her outside the building, and what I encounter was an exhausted mother full of anxiety, with his son on the sidewalk covered with glitter from head to toe. She knew the glitter would create a mess, but it was her last resource to keep him calm. Thank God that the rental that I got was a familiar one for my son, who usually has a hard time getting inside someone else’s car. A couple of weeks before, our car was being repaired and my brother-in-law lend me his. It was a white VW Jetta, and when the rental place in Austin didn’t have any of their economy cars and offered me a Jetta, I ask “do you have a white one”, and thank God they did. Otherwise we would have had another scene just trying to get him inside the car to get to the hotel.

Perhaps I should take you to the beginning, when we almost lost our flight because of two reasons: the father was not around, and the son didn’t wanted to board the plane. I don’t know how she did it, but my wife got us an escort through the entire process of boarding. We didn’t have to wait in line, we had help passing our stuff and my son’s medical supplies, and he even left his shoes on at the inspection area. So far it was all going ok until we find out that his dose of meds that I had prepared for him was all poured in his lunch bag. It was his daily dose of medicine for his metabolic disorder, and the remaining one was inside our luggage already stored inside the airplane. I thought that it was ok if we waited until our arrival at Austin, but my wife thought otherwise. She made the airline employees find our bags, and me go to the baggage claim area to take the medicine and bring it to our terminal. The little detail was that once I was in there, I had to go through the whole inspection process once again, and there were a lot of people there. If I hadn’t asked for help, I wouldn’t have made it. The attendant helping me had a 2-way radio were I heard “please bring passenger” and my name. A couple of minutes went by and then “please bring passenger” and my name again. And then suddenly I heard “we need the dad here, now!” and she told me “let’s run!” We finally got there and I found my wife carrying my son and trying to get him inside the plane, and he with one foot at each side of the airplane door fighting not to get in. I immediately took charge of the situation and eventually got him inside and properly seated.

During the flight itself and during our stay at Austin, everything was normal in terms of his behavior. It was the airport with all the people, the noise, the waiting, etc., that was the most difficult part for him, and therefore for us too.